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Aiden had an appointment with a specialist yesterday to see about getting a helmet to help with his plagiocephaly (flattening of the head) due to his torticollis (a muscle in his neck isn't long enough). His head was bad enough to qualify him for a helmet so we were just waiting to hear if insurance would cover it or not. In the mean time, the specialist wanted to get an xray to rule out another condition Craniosynostosis, it's where the bones in the head fuse prematurily.
He had an appointment with his regular doc today, and she did the xray. Well about 4:30 I got a call saying that he did have Craniosynostosis but the xray tech thought it was mild and they wanted to get an ct scan to make sure. So we now have an appointment for the scan on Friday. I am so scared, the only way to correct Craniosynostosis is surgery, where they take some of the bones in the head out to make sure there is enough room for the brain to grow.
I know many of you have been through multiple surgeries with your children, but I have not. My older two children have autism and FAE and have never been through surgery or anything like that. Alex has never been hospitalized and Katie was only hospitalized once for a allergic reaction.
Has anyone been through this before that could give me some pointers, and let me know what to expect?

I've never been through this exact surgery, but we have all been through at least one surgery. I know how scary it is, but i dont want you to get ahead of yourself. Take things one day at a time. I know all of this is a lot, and your first thought is to research it as much as you can, but be cautious of that until you have an actual diagnosis from a DOC, not a tech. There is a reason they go to school longer. Get your CT and see what it says and take it one day at a time.

This is not my attempt to tell you that everything is okay, i know we all hate that. This is just me trying to make sure you take it one step at a time. KUP on the other testing. Keep your head up Mama, you're doing great

We haven't had that surgery, but Kyle has had about a dozen to date, with more coming down the road (associated with a chest/cartilage malformation). Surgeries are always tough, it's your child - you know?

I think everyone has to find a way to deal with preparing for it, the recovery time - and the long term aspect (if any). For me and my DH, once we have a diagnosis - we research. Maybe we go too far, but I want to know - I don't like surprises, and I'd rather know everything from best case to worst case, so I'm prepared. And I like to know and see it in my head, when the drs are telling me something. Otherwise, I don't think I could handle it emotionally - all that well.

It also helps if you have a good support system, whether it's friends, family - your spouse, whatever. You need an outlet. A lot of women like to blog, because writing is sharing - and it helps to get it out.

I agree with the PP, please don't worry and stress until they give you reason to. I know it's hard. ((Hugs)) That's great that he's getting a helmet, which will help so much! I know how hard it is to stay calm with all these diagnoses being thrown at you. You're in my T&P! Please KUP

Ironically we're being told the exact opposite. Her plates aren't fusing. This is probably require a helmet too. Let me know how he does with his!!

Hugs and good luck, hon!! Try not to think and worry about surgery until they tell you it's inevitable. Things can change, you know?

If and when they do say he needs surgery, never be afraid to after his doctor every question you have. Knowledge is power! I researched like crazy and asked lots of questions, just to make myself feel a little better. Also, I don't know how long a surgery that one is, but see if your doctor is willing to have someone send you word now and then. That was a huge help to me during Danny's surgery; it was a 6-7 hour ordeal, but they checked in with me occasionally, just to let me know he was doing fine.

I am sorry. Justin had a flat spot that was BAD when he was an infant. Unfortunately he didn't have a very proactice dr. and never sent us for x-rays or recommended a helmet..so he still has a flat spot. Ugh.. I hate that dr. Anyways.. He went for x-rays once he was seen by a different dr. who had me believing he would need the surgery. Thankfully he didn't. I read up on it and it had be very scared too.

I have no advice about surgeries.. I am going through the samething with my son Justin (needing kidney surgery) I just wanted to tell you I hope things turn out good and he can just get the helmet for correction.

I can only hope that they are wrong and the helmet will help. If he does have Craniosynostosis than the helmet won't help at all because the bones in his head need to be flexible for the helmet to work.

I'm so sorry! When do you expect to have an answer? I'm sorry that I don't remember and can't seem to find it-how old is Aiden? I hope that he doesn't need surgery. Surgery can be so scary!

Milo has plagiocephaly, but he was born that way. It's also not a flattening for him, but like the right half of his skull slipped forward. No amount of positioning is helping. We're sort of waiting to get through everything else before doing more about this. Surgery was mentioned, but our appointment isn't for another month. The thought of head/brain surgery freaks me out.

I'm sincerely hoping that this isn't what's going on and that you ARE able to use the helmet for Aiden!!! The helmets are a pain, but preferred, I know! Many hugs-KUP!

Aiden goes in for his CT scan tomorrow morning. He is 4 months old. I am still trying to hold out hope that it is just plagiocephaly. Him wearing a helmet doesn't bother me at all, it's alot better than surgery. But I will do what needs to be done. The more I read the more scared I get. All the pics I have seen of the craniosynostosis look exactly like Aiden's head but I am trying to remain positive, though it is hard. Hopefully I will get the results back tomorrow and won't have to wait until next week. I have never been through a CT scan so am not quit sure what to expect. Do they usually tell you right away or do you have to wait to hear from your doc?

Aiden did really well with his CT scan, he stayed still so he didn't need to be sedated. A couple of hours later I got a call from his doc saying it was not craniosynostosis. I am so relieved. Now we just have to wait to see if insurance will cover the helmet. I should get an answer by next week.